“O’ my ostomy!”
Disclaimer–Its a long post but it will wrap up the description of the event
The first part of the ileostomy story can found on the “Ileostomy life” page, so go read that to see how I landed in the ER on 12/11/14. Here I’ll discuss what happened during my stay in the hospital, specific difficulties I had, and my incredible support system.
The Abridged Play by Play:
When the doctors entered my abdomen they were met with a lot of stool which they did not expected (a lovely surprise!). This stool was free in the peritoneum (abdominal cavity) causing peritonitis (inflammation of the peritoneum-abdominal cavity). This situation set me up nicely for sepsis (infection in the blood) which is a very serious clinical situation. The unexpected peritonitis and amount of free stool forced the hand of the surgeons and they decided to clean out my abdominal cavity to allow the inflammation and swelling decrease (re joining this inflamed tissue is challenging as the connection will not heal well). The wound was left open, covered and I was put on a ventilator in the ICU. This allowed the severe inflammation to go down some so that we could come back to fight another day.
The surgeons went back to work the following day and resected two areas of the jejunum and to keep things simple made an ileostomy. Most of my severe inflammation was in the middle of jejunum with some mild inflammation in terminal ileum (closest to the cecum-first portion of large intestine). The colorectal surgeon on call was consulted to examine the bowels and additional thickened bowel that had active Crohn’s was identified in the terminal ileum (right next to the cecum). The colorectal surgeon explained that the reason for the perforation was likely this strictured bowel causing high back pressures due to muscle contractions that could cause perforation in regions of severe inflammation. Bottom line is that I woke up with an ileostomy.
I remained on the ventilator for 3 or 4 days (I am not sure exactly when they removed it) but I was unconscious and have no memory of the ventilator. My first memory following the operations was the removal of the catheter….suffice it to say its an unusual sensation. Throughout these first few days of my where I was conscious, I was concerned about acquiring a hospital infection from the NG tube, the catheters, pic line or ventilator. You do not want one of these bugs at all and I was having trouble breathing so I was very nervous.
I was in the ICU the following week as I was experiencing fevers as high as 103 degrees F (39.4 C). Interestingly these fevers always started in the late afternoon and would brought on by shaking in my legs. For this week, the fevers at specific times were as sure as the sunrise. I had these for basically a straight week and a half with no explanation. I would get super hot (basically wearing no clothes), sweat profusely and shake/tremble quite a bit. I would get so hot that I’d just drape the gown around my waist so I was essentially shirtless. During this time all the deans of the medical school decided to visit me and since I’m the kind of guy to plan outfits to dress for success (haha) I landed on the wear the gown around your waist look.
To try and find the cause of these fevers the doctors looked wherever they could but to no avail. They tested my urine multiple times, blood multiple times (annoying because they need blood draws from both arms and it cannot come from the pic line so two additional sticks), and they even drained and tested fluid that had accumulated in my abdominal cavity. Remember if they are looking for bacteria in your blood (suspected sepsis) the blood cultures can take several days and the blood draw alone can contaminate the sample if done improperly. During these three weeks I got poked, prodded and imaged more than I thought possible…and interestingly my white blood cells (the cells that fight infections) fell steadily after the surgery (if there is an infection you expect high white blood cells) .
Around the time my fevers had started the docs wanted me to get up and start walking. . . I was not thrilled. On top of being sore, I had collapsed a lung somewhere during this whole mess and was super short of breath (even on 5 or 6 L of O2 per minute). So I buckled down with the incentive spirometer devices which unless you’ve tried to use them you have no idea how difficult they are. I was only able to inhale about 500-1000 mL for the majority of my hospital stay. I was so annoyed with these machines but they are actually really important and over time they helped get my breathing back up to snuff. The inability to breath made even changing positions in my room to a chair required significant effort. Seeing how far and how quickly physical capabilities can be lost is eye opening. I lost 25 pounds during these 3 weeks and I am still really working on building back my strength, endurance and maintaining my weight. Let me tell you it only takes two seconds in life to go from feeling on top of the world to having a nurse emptying your bag and helping you shower.
Specific problems: Dry mouth, Fentanyl and Urinating
After the ventilator was removed I was left with what is called a nasogastric (NG) tube. This tube goes up your nose and extends down to your stomach. I was asleep when this was inserted so I cannot describe that sensation. My NG tube was suctioning out anything that reached my stomach. For about a week I was unable to drink water so my mouth felt like death-valley. *PATIENT TIP – The only way I managed some partial relief for the dry mouth was sucking on hard life savers (yes they were better than throat lozenges) and using an oral moisturizer. This moisturizer made your mouth feel like you had eaten hand lotion but it helped. Everything else either did nothing or made the problem worse.
For the week following surgery I had been taking Fentanyl for parinr management through my little “pez dispenser of pain medication”. This worked fine initially, but after about a week of continual use I began seeing things when I closed my eyes. I would classify these vivid images as borderline hallucinations and they scared me. I asked to change the medication to Dilaudid and within 24 hours these images had gone and I was able to sleep…However once I was on the Dilaudid a new problem came up…. I couldn’t urinate.You need to be your own advocate in the hospital, if you notice something unusual or different bring it to the attention of the nurses ASAP.
Not being able to urinate was frustrating to be polite and I was straight cathed (go in, drain, come out) 3 times and then ultimately they put the Foley catheter back in. Im not going to lie this sucked but overall it isn’t as bad as you imagine. When you are getting close to having a liter of urine in your bladder but cannot manage to urinate on your own you’ll do just about anything to get it out quickly.
For me there was only pain for a brief second for the first centimeter or so when the catheter was inserted. After this initial pain I just discomfort (so for all you guy out there yes it sucked but I lived and it is more relieving to get that urine out then it is uncomfortable to get the cath put in so the cost benefit is worth it in my opinion). Also TAKE YOUR PAIN MEDICATION THROUGH YOUR PCA A BIT BEFORE BEING CATHED…IT HELPS.
The Exceptional Care I Received:
Now that I am out of the hospital I can say that the level of care I was shown at my hospital was moving and far beyond anything I could have expected. Not only were my physical and psychological needs met, but those of my family as well. Everyone in the hospital treated me as if we were their own, I’ve never experienced anything quite like that level of acceptance. I think basically every physician gave my parents and me their business cards and some even their personal cell phone numbers. Folks you cant find this level of caring every day and if you do come across it, make sure you do everything in your ability to show thanks to these people.
Everyone in the hospital treated me as if I were their own. from the folks who cleaned my room, the people who brought me food (and learned quickly I prefer strawberry Ensure over other flavors), the caretakers who work hard around the clock, the nurses who made me feel at ease with their professionalism (even ones younger than me who had just graduated nursing) and the physicians who should be emulated in my opinion. Someday I hope to be like these physicians, ones with tremendous skill and humanism. A powerful combination. WHEN YOU GET A ILEOSTOMY YOUR BEST FRIEND NEEDS TO BECOME THE STOMA AND WOUND NURSE. HE/SHE HAS ADVANCED TRAINING AND THEY’RE LIKE MYSTICAL WIZARDS WITH CONTROLLING THE STOMAS. BE SUPER NICE TO THE STOMA NURSE BECAUSE WITHOUT THEIR HELP YOU WILL BE OVERWHELMED. I got front row seats to the very valuable lesson of seeing how everyone operates and deals with each other in terms of the health care team from the patients perspective.
This post is too long to discuss my support system but trust me I could not have done it without them. I will have a follow up post.